Re: ER visit last night - to Deb

[Guest guest]

Debs,

Your letter was addressed to Angie, and hopefully when she has a

chance she'll reply too, but I hope you don't mind my stepping in, as

I read it like everyone does, and can answer some of those questions

that are bothering you so much. You said:

>If the enzymes don't go up any more is this still pancreatitis. My

doctors tell me yes, that as the pancreas progresses with disease it

causes less enzyme elevation. Is this true? -

- Yes, this is true. As the damage caused to the pancreas destroy

more enzyme function, there is less enzyme elevation even during an

acute attack. Those of us with advanced disease rarely show any

enzyme elevation at all, or slight elevation.

>Is the distention from the pancreatitis? They tell me it is.

- This is also true. Gasses are trapped within the gastric system,

causing distension and abdominal tenderness.

>How long do you stay on the clear liquids?

- Most people stay on the clear liquids two or three days, sometimes

more. It's vitally important that you keep the pancreas well

hydrated, this will help to ease your pain. Water is an excellent

choice, as well as clear fruit juices, gatorade or green tea. As far

as when you can eat again, you have to judge that on how you feel,

when the bloating and distension go down, and by how you can tolerate

simple, bland additions to your diet. A good place to start is with

some sugar free jello, or pureed fruit, and see how your body

tolerates that. Once you can start digesting simple foods, you can

gradually add more. Many people start back with baby food desserts

and fruits, until their digestion can tolerate more substancial foods.

I hope this helps, Deb, and I hope you get back to feeling better soon.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

Note: All comments or advice are personal opinion only, and should

not be substituted for professional medical consultation.

[Guest guest]

Heidi, Thank you for responding. I have been clear liquids for two days

and feel better already. I drink crystal light about two liters per day.

I am going to try and go plain water with a little lemon maybe. Do you

find sugar to be a problem, besides the diabetes just the toll on the

pancreas? It is so good to have those such as yourself to help us new

bees. I have been on only pureed food for over one year. All I want is

a venison hamburger!!! Every time I up the consistency I get an attack.

Are there those that have to live like this the rest of our lives?People

say oh you can eat, if they only knew or understood the intense pain with

this disease. It is relentless. But, I have overcome many other

barriers and I can do this too. I pray for you and hope you will keep in

touch. I need the reassurance sometimes. God Bless you on this glorious

Sunday morning. Pain free to all. Deb

[Guest guest]

Deb,

I've heard you speak about the barreness of your diet, and that you've

not been able to eat real food for over a year now, and I honestly

don't know how you can do it! It makes me realize how truly fortunate

I've really been because although while having CP made me have to

adhere to a low fat diet, I never had anything close to the types of

food problems that you suffer from. Now that my pancreas has burned

out, I find that I can eat many of those foods that weren't acceptable

when my CP was active, but I'm still not at the point where I can eat

anything I want, like I could pre-CP. This week I had 97% lean

hamburger, (in spaghetti and lasagne), three days in a row because

they are some of my son's favorites and we are spoiling him this week.

Although I can eat it without pain shortly afterward, it does cause

havoc about 8-10 hours later within my digestive tract and I spend

half the morning in the bathroom with explosive bowels....hardly worth

the effort to enjoy it the night before! You mentioned venison

hamburger - I share your preference for that, or even bison, as both

cause me no problems at all.

But what a relief it was to have a Mexican chicken casserole this

evening for dinner! I know my digestive tract can handle this and I

won't have any troubles when I wake in the morning.

But enough about food, I didn't mean to be rude to be talking about it

with you when it's not tolerable for you. If you don't mind my

asking, precisely what happens? Does consuming real food cause you

severe pain, or bring on an attack every time you try it? What do the

doctors say can be done about this? I just can't imagine them letting

a year go by without your being able to eat anything more substancial

than pureed foods. Do you take enzyme supplements? The whole thing

just baffles me, and I just don't understand why they can't do

SOMETHING to make it possible for you to tolerate solid food again.

It must be so utterly, horribly discouraging for you, and I admire the

fact that you're still here asking questions and trying to learn

while you face such a discouraging problem every day.

Crystal Light is wonderful, isn't it? They have so many good

beverages, and I'm especially fond of their Raspberry Iced

Tea.....yummm! I make it by the pitcher and drink tons of it nearly

every day.

I haven't ever heard of anyone else who had this type of problem that

continued for so long, so I do hope that means that somehow, someday

soon, a resolution for this intolerance will appear and you'll once

again be able to do more than long for a venison hamburger, but

actually eat one without any trouble afterwards. I do think that you

can lick this problem in time as long as you can keep your positive

attitude and perseverence. Every day something happens that people

say never could....just keep that thought, and perhaps one day soon it

will be your turn.

Take care.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

SC State & SE Regional Representative

Pancreatitis Association, International

Note: All comments or advice are personal opinion only, and should

not be substituted for professional medical consultation.

[Guest guest]

Heidi, No not easy. It causes severe abdominal distention, to the point

that you would not even recognize me. My husband can not believe how bad

it is. I have a megacolon with frequent ileuses and the distention is

awful with that. My major GI's are in Pittsburgh at UPMC. I had

hyperalimentation for over a year along with my pureed food. They are

wonderful. The only solution that they have is to put an ileostomy in, a

pouch on the side and have me pass stool that way. The only problem is

that the CF MD's say that it will severely dehydrate me and be very

risky. My hypers are out because I got septic three weeks ago from the

central line that was in my heart for a year and a half. The pain yes is

unbearable at times. They give me pain medicine they are liberal with

it. But--- it causes terrible constipation and then I get an obstruction

and that is worse. Yes, it is no life my dear but God knows I guess that

I have a purpose and I'm going to continue to find it. I never eat

during the day the pain and distention is so bad. I also have

gastroporesis so I don't move my food down the GI tract and it ferments

and causes more gas along with the pancreatitis. Yes, I take enzymes.

They do not seem to help. I also have candida in the esophagus and that

is why I have to give up the sugar and grains. Now, maybe you can see

how I got hooked on the sugar candies, it was the only thing I could get

calories in. But it is now my enemy. Pray for me Heidi, somedays that

is all I can do. I have gained a few lbs. lately. I have a lung

infection right now and is no fun. Fever for many days and lots of

sputum. I could go on and on but no more to be said.

Take care and I pray for all of us. God has given me another day, so I

must use it well. No sleep last night my blood sugars were crazy. Deb

[Guest guest]

Deb

what is megacolon? and what are your symptoms when you have that and

an obstruction

I too have been admitted for an impaction and I have dreadful

constipation. I take up to on a bad day 9 hospital grade fleet

enemas to go and then it is large amounts as it can be a few days

stored.

I am on stool softeners, laxatives, and tiem release meds but

nothing works

I often have dull pain in my bowel regions sometimes it gets sharp.

I am also severely anemic, came back 4 should be 24.

I am interested as it sounds like what I have. I have been offered

th etaking out of bowel and bypass , not a route I want to go

cheers

debs

[Guest guest]

Debs, A megacolon is when the colon does no longer have contractability

and does not move anything through the colon. Very painful, lots of

distention, gas, bloating, and gastroporesis. I do not use enemas nor

have I ever. I use senna, mom, and miralax. I really can't describe it

any other way. It is very difficult to eat when it becomes real large.

The larger it becomes the more likely it is to rupture. That is when the

pseudo ileus occurs. Some days everything makes me sick. take care and

keep in touch. Deb